Tuesday, October 23, 2012

Just a short note to say I've added a new RSS feed for the A Chronic Dose at my new site, if you used to reading posts that way and prefer to keep up with it. If you click over to the site, you can find the RSS feed button at the top of the page on the right side, with the social media buttons (FB, Twitter, etc.).

So, now there are two easy ways you can subscribe over there: you can sign up for email updates on the sidebar, or you can update your feed using the new button above.

I think that's the last tweak--thanks so much for bearing with me, and following me over to the new site. Hopefully, this is the last post you'll get from me from this old site.

Wednesday, October 17, 2012

At last, I am up and running at my new site, and am excited to start posting more regularly again, and to offer a variety of content, including interviews, book reviews, and much more.

I am so appreciate of your readership and support, and have a few brief requests for you.

Can you visit A Chronic Dose at its new home, and update your readers/feeds by using the subscription box provided there?

I also have a new Facebook page to consolidate information on both of my books, including book events and readings, publications, and fresh content relevant to the patient community. I would love it if you'd take a moment and "like" the new page by clicking here.

And lastly, can you leave comments at the new site if you run into any glitches?

Sunday, October 07, 2012

Sometimes when I am driving the last leg home, I am still surprised that this ride, that this life, is mine. Thankfully it is a beautiful, scenic New England drive, full of vibrant leaves, pastoral fields and farms, antique houses, and marshy conservation lands, because it certainly isn’t a short drive. (Thankfully, too, I don’t commute to downtown Boston every day, or at rush hour.)

After I battle the pedestrians and buses and cyclists and congestion of Huntington Avenue all the way out of the city, then the traffic lights, construction, and congestion of my old neighborhood, and start the back roads route home the rest of the way, something in me shifts. I am less tense and anxious. There are fewer traffic lights, more people willing to let me change lanes or turn left, there is lots of sky and trees and the changing of seasons is so distinctive. As I cross from one town into the next, inching closer, I relax. I appreciate the scenery. I don’t care what’s on the radio. If my daughter is with me, we talk about the colors she sees on the trees, or what colors the horses are, or where the moon goes when the sun is up high.

Remember, this is coming from the person who, for fourteen years, has lived in the city or right at the edge, who has never been beyond a few minutes’ walk to coffee, Thai, and public transportation. When I lived in Dublin, I was around the corner from the Guinness Brewery and could smell the hops, and less than then minutes on foot from Trinity College and City Center. When I moved back to Boston from Washington, DC, I lived above a trendy restaurant in the South End, then directly across from the State House in Beacon Hill, then right at the intersection of three of the busiest roads in the city where the Jamaicaway, Rt. 9, and Huntington Ave meet. Even when we were on the outskirts, we were still on the D Line train, and had a commercial area with shops, cafes, and restaurants around the corner.

Admittedly, I was a suburban and exurban snob, and couldn’t imagine being far away from so much. I thrived on the proximity to people and places, and drew energy from the pace around me.

Until I didn’t anymore.

My favorite place in the world, my happy place, if you will, is Cape Cod. Just the thought of it brings up memories of long summer days, lots of cousins and family, time with my grandparents, and a freedom to be just be, instead of being a patient or a student, etc., that never existed like that in any other part of my life. We’d pack up the car for the summer and as soon as we crossed the bridge, I relaxed.

I love the beach and I love summer, but as an adult, my favorite time of year on the Cape is the fall and the very early spring, when the crowds are gone and the view is just as spectacular, if not more so because there is no else clamoring for the view. A short weekend trip or just an overnight gives me peace like nothing else. Even with wi-fi and deadlines and my briefcase and traffic at the bridge every time I am there, I breathe more deeply, I exhale more fully. There is less congestion in every sense of the word, and less pretense. I can’t think of a better way to describe it than that.

To a smaller degree, it’s that same content feeling I notice on my long drive home. We expected a lot of benefits (and challenges and drawbacks) from our move, but this I did not expect. I never thought I was someone who was suited for lots of trees and quiet, dark nights and small-town life. Place had a different meaning.

But somehow, it’s working. Life feels a little less out of control here. And with a lot of very hard, very heavy stuff going on behind the scenes lately, I will take serenity wherever I can find it.

And, in the spirit of new places, my new site, laurieedwardswriter.com, will be up and fully functional in the next day or so. This blog will still exist under this name over on the new site, and this current site will automatically redirect you to the new home for A Chronic Dose and you can still subscribe from there and update your feeds, but the blog will be one branch of a larger site dedicated to my books and my professional identity. It’s more than a much-needed design and function update. It’s taking ownership of a distinction that is fundamentally really important to me: that of a writer who is also a patient, not a patient who writes.

Anyway, I am really excited to move to the new site, and to change up the style, consistency, and frequency of my posts over there. Sometimes the best way to really find a groove again is to start from somewhere totally new.

Monday, October 01, 2012

I can tell that I really am finding a groove again after such a long time—I find myself writing posts in my head while stuck in traffic. I think about essays that I want to write and send out to editors. (I don’t see this happening any time real soon, but the impulse is there. The stories and opening sentences and phrases are there.)

A confession: I have always had an extremely strong aversion to the term self care. Like, shudder. Unless I’m using it in terms of my newly-minted two-year-old and things like her brushing her own teeth, putting on her shoes, and things like that, it’s just never, ever been part of my lexicon.

It’s hard to articulate why, but part of it is that to me, it somehow seems…indulgent. Intellectually I know that’s not true, and that what is self care to one person may seem extravagant to another, and vice versa, and that what self care means to and among patients varies widely, too.

After a whirl wind new baby-more demanding job-family health extravaganza-book due-selling, buying, and renovating-house couple of years, I think I am finally settling out a bit. Even just having the book done and not automatically having to work late every night, or occasionally using my daughter’s weekend naps to do housework instead of just work work has made an enormous difference.

And with some space to actually do things deliberately this fall, instead of just scrambling to stay afloat, I find myself trying to establish new patterns. Like I said, September always feels like a fresh start to me, and that is especially true this fall, as we’re getting used to our new town and new lifestyle. I never knew how much of an impact place would have on me, but more on that later.

(And, speaking of fresh starts and new locations, I’m going to launch whole new site really soon! Stay tuned for details as we tweak final changes…I am really excited!)

I’m going to bed earlier, which for me means striving for 11pm, but it is a start. I actually feel asleep at 10:30 the other night and it felt wonderful. I really miss the awesome gym near where I used to live, but I have found a home workout routine that I can fit into my life realistically and can stick with, and it feels good to have some structure back, especially after a summer of living out of bags and packing and unpacking way too many times.

I’m experimenting a bit with recipes again, and incorporating a lot more high-protein vegetarian meals into our family diet. I’m planning late afternoon adventures most days of the week, and lately, I haven’t stopped to get the coffee on the way to the playground or the farm or the pumpkin patch that I always used to need en route to our various jaunts. (Every time we pass by a Dunkin Donuts, my daughter says “Mama really likes coffee.” Yikes.)

I got my hair cut for the first time in, oh, seven months, last week. “Don’t ever do that again,” said my new stylist. Trust me, I won’t.

For so long, when I couldn’t find a life rhythm, I couldn’t find a writing rhythm, either. There was no place for new words, for reflection, for ideas swirling around and percolating. I much prefer imagining new posts while stopped at red lights to falling asleep at them (because yeah, that happened).

I’m not trying for radical changes, I just want a little bit more balance. If that’s self care, then I guess that is now a part of my lexicon.

So tell me, what sorts of small changes or new habits are you undertaking? What’s one practice or tip you absolutely recommend?

Thursday, September 13, 2012

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It's great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Tuesday, September 11, 2012

And with that, she was too engrossed in arts and crafts to give much notice to our leaving. I spied a glimpse of her through the window as we crossed the parking lot: earnest, happy, comfortable.

As far as first days of school go, it was a success. (She’s not quite two so it’s a daycare at a school, but she likes calling it school and feeling like a big kid.)

There is so much I am excited for her to learn. Now, she’s known all her colors, numbers, and letters for a really long time, is good with self-care, and says “please,” “thank you,” and “bless you” when people sneeze. Those aren’t the kinds of lessons that matter to me right now. Instead, I am eager for her to socialize. To learn to share, and to cultivate an awareness of others and their needs in relation to her needs and her wants. To learn how to situate herself and her personality within a group of peers, and to remain confident in her ability to play and discover independently, too. I am excited to see how she grows and changes from these oh-so-important life lessons.

It’s a big change for our family, out-of-home care, and we love the place—dedicated staff, part-time hours that meet our needs, and wonderful activities and opportunities. It’s a good change, and she is thriving there, so it is time to give her the space to do that. But it represents the beginning of so much: the little world she has known so far is getting bigger, and for the first time, people beyond our relatives and our close friends will have direct influence on her. This is all natural and normal, but letting go…it is not easy.

I tend to think in semesters, an inevitable byproduct of twenty-one years of schooling and now several years teaching in universities. September always feels more like a new year than January 1 does, so it is fitting that so many things are transitioning right now.

The final copy edits are done on my book, which is now with the typesetter. I should see proof pages soon. Obviously I feel an enormous sense of relief to be at this stage, but it’s also unsettling. Maybe this is a normal part of writing, but right now, I am overwhelmed by the idea that this is final, there is nothing more I can add or change. Right now, as it turns from a marked-up manuscript into an actual book, I am plagued with what isn’t there, the themes and ideas that I didn’t delve into. Scope is incredibly hard to manage, and while intellectually I know I can’t include everything that’s ever interested me or is somewhat related to my topic or I’ll have a thousand pages, I can’t quite silence the little voice that asks, “What about…?”

I tell myself I’ve done the best I can, I’ve put in the hours and the revisions and asked the right questions and now it is out of my hands. Soon these pages will be out in the wide world, and so many more eyes will see them beyond the tight little circle of readers and editors I’ve had. The words will have to stand on their own, and it is time to give them the space to do that.

It is normal, it is natural, it is the progression of things.

But when pieces of your heart are out there, the letting go? It is not easy.

Friday, August 10, 2012

For the next edition of Patients for a Moment, Duncan Cross asks how we roll with chronic illness. Since I’ve made two fairly long car trips in the past couple months, travel is a timely topic for me.

When I read the prompt, I couldn’t help but pull up a post from the vault, this entry from July of 2006 that captured my most humiliating experience ever. Click on over for the gory details, but it involves airline inconsistency, public disclosure of personal health details, an insensitive bully, a whole lot of red-faced shouting, and The Vest, my expensive and unwieldy piece of medical equipment. Good times.

Aside from traveling to see family, we don’t really have a chance to travel much. In fact, a five-day trip this spring was the first real true vacation we’ve had in years. We haven’t had the time—and haven’t made the time, I suppose. But beyond that, I end up having to cancel things at the last minute often, which makes me hesitant to plan too far ahead. I end up paying a steep price whenever I do make a trip, even a short overnight for a conference or a meeting. Inevitably, I catch something from being on the airplane, and it takes weeks, sometimes months, to clear my system.

So, given that airline travel makes me sick, and my hesitancy to purchase the ever-expensive plane tickets too far in advance, when we do need to be somewhere, we’ve started driving. (Unless it is just too far and too short or a trip, or we find a great deal on tickets, and it’s not cold/flu season, etc.) We have family in Michigan, so years of 12-hour drives have helped condition me. We can control how long we’re on the road, we can stop if we need to, and we honestly, we really love the chance to just chat. Sometimes we’re several states in before we even turn on the music.

By now, we know which rest areas have viable food options for me, as gluten-free food is tough to find on the road. We know which hotels take dogs, which routes have the best views, and the best spots to fill up on gas.

I’ve learned to keep my “regular” meds in my purse in the front so I can reach them easily. We pack tons of water and low-sugar drinks, and I’ve started bring a cooler of healthy snacks—balanced nutrition bars, trail mix, yogurt, etc. That way, if the (scant) salad offerings are more meager than usual, I know I have something to eat that is gluten-free and has protein. I keep my brain fog in mind when we divvy up the driving.

(And for the toddler? Lots of books, snacks, and a mini DVD player she watches Baby Signing Time and Sesame Street on. She can turn it on and off, rewind/fast forward, and change the volume on her own, which makes the process pretty painless. So far, we’ve been really luck she rolls so easily and without complaint.)

Of course I do fly and take the train at times, but taking travel into my own terms (and staying healthier for it) has made a big difference.

Monday, August 06, 2012

It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Friday, August 03, 2012

It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.

Sunday, July 01, 2012

Last week, WBUR, the local NPR station, ran a week-long at Lyme disease and chronic Lyme disease. The controversy over chronic Lyme disease (and specifically, how social media and the Internet have influenced patient advocacy and Lyme literacy) is something I explore in a later section of my forthcoming book, so I was interested in seeing mainstream media offer a sustained look at the issue. I know several people who have suffered from Lyme disease and chronic Lyme, including Jennifer Crystal, a writer and grad student at my graduate school alma mater, Emerson College. I spoke with Jennifer at length when I interviewed her for my book, and I checked in with her in the wake of this recent media coverage.

Even if you haven’t been touched by Lyme personally, Jennifer’s diagnostic journey and her thoughts on ignorance and fear will resonate with anyone who has struggled to receive a correct diagnosis.

1. I know your journey to diagnosis was long and complicated. While I
share the longer version in my book, can you give readers a brief synopsis
of your story? Would you agree it shares similarities with Barbara McLeod’s
Lyme story, which WBUR reported on last week, and which received a lot of interest and feedback?

My story is very similar to Barbara's, in that we both got sick when
we were young, otherwise energetic and eager professionals, and we
both struggled for too long to maintain that identity while mysterious
symptoms ate away at our lives. Like Barbara, my tick-borne illnesses
went undiagnosed for a long time, and I was repeatedly turned away by
doctors who thought I was stressed, run down or depressed.

I was bitten by a tick in 1997 while working at a summer camp in
Maine, but my waxing and waning flu-like symptoms did not get properly
diagnosed until 2005. By that time the Lyme bacteria, as well as the
co-infections ehrlichia and babesia, had spread to every system of my
body and crossed the blood-brain barrier. I wrestled with severe
physical and neurological symptoms that left me bedridden and unable
to work or care for myself. It took many years of treatment, including
intravenous antibiotics and strong anti-malarial medication, to get me
back on my feet. I am much, much better than I was several years ago,
but I still live with limitations today and still take medication to
help maintain a certain level of health.

2. Much of the current debate centers on chronic Lyme. Again, I know
this is a complicated situation, but can you briefly discuss why you think
there is such resistance to the existence of chronic Lyme from some factions
of the medical establishment?
I think the resistance comes down to two factors: ignorance and fear.

The Infectious Disease Society of America mandates that all cases of
Lyme disease can be treated with 28 days of antibiotics. This is true
for cases that are found and diagnosed right away. However, all too
often, Lyme disease goes undiagnosed and untreated, mistaken for other
conditions like chronic fatigue syndrome, MS, arthritis or lupus. Some
doctors only know to look for a bull's eye rash, which manifests in
less than 50% of cases of Lyme disease. To make matters worse, Lyme
disease testing is not reliable and not always accurate, so there are
a lot of false negative tests. For these reasons, the Lyme bacteria
can be left to replicate for months or even years, wreaking havoc on
the whole body. Any infection that becomes that severe and systemic
cannot be treated effectively with a short-term course of antibiotics.

Some doctors who may be Lyme literate--ie, who understand the
complexities of the disease and its diagnosis described above--are
fearful of prescribing long-term antibiotics because it goes against
the IDSA rules. They are afraid they might lose their licenses. In CT,
Senator Blumenthal passed a bill that allows Lyme doctors to treat at
their discretion. This was a huge victory for patients who could not
get the treatment they needed; I hope this kind of legislation can be
passed in other states, too (or, even better, that the IDSA guidelines
will be changed).

Most of the arguments I've heard against chronic Lyme disease make the
erroneous assumption that cases that have become chronic were caught
right away and treated with a standard course of antibiotics. Herein
lies the problem. Cases become chronic because they go undiagnosed for
too long. Therefore, I think doctors should stop arguing over whether
chronic Lyme exists, and come together to figure out how to better
diagnose Lyme disease at its onset, so that chronic suffering becomes
moot.

3. I’ve seen more news stories about Lyme’s co-infections lately, and I
know you’ve written about those recently, too. What are some the biggest misconceptions about Lyme disease and co-infections you’d like to dispel?

I am so glad to see that Lyme disease awareness is spreading, and am
grateful to WBUR for their week-long coverage of the disease. I'm
especially grateful that they also included co-infections in their
discussions, because we can only win the battle against tick-borne
illnesses if we spread awareness about all of them. Co-infections such
as babesia, erhlichia and bartonella (the first being parasitic, the
second two bacterial) can be transmitted from the same tick that
transmits Lyme disease. They can complicate treatment, and require
different medications than standard Lyme disease. Some patients with
Lyme don't get better because they are not being treated for the whole
picture. I think it's imperative that doctors who suspect Lyme in a
patient also test for co-infections. A true Lyme-literate physician
will also be literate in the diagnosis and treatment of co-infections.
I think sometimes these infections are overlooked because they're
obscure (difficult to pronounce!) and people don't know much about
them, but that's a grave mistake.

4. It’s summer, and here in New England the deer tick population is
intense. What are some practical, everyday tips for tick prevention?

The most important thing to do is to make tick checks part of our
daily routine, not just for ourselves, but for our animals, too.
Taking a shower immediately upon coming in from outside is helpful, as
is throwing clothes in the dryer for 20 minutes (ticks can't survive
the high heat). When hiking or camping, it's important to wear long
sleeves and light-colored clothing (to make ticks easier to see).
Using bug spray with DEET is helpful, but permethrin is even better.
This synthetic tick-repellent can be sprayed on shoes and clothing.
Stores like REI and LLBean even sell clothes that have already been
treated with permethrin (the insecticide stays active through 6
washes).

Thanks so much, Jennifer. I’m looking forward to sharing more of your story when the book comes out, and to seeing more of your published writing on chronic Lyme and Lyme’s co-infections. Keep up the good work!

If you have experiences with Lyme disease/misdiagnosis or tips to share alongside Jennifer’s, please do!

That’s the short version. The long version is one I couldn’t write until now—until the final final edits were turned in and accepted, until the Table of Contents page was revised again, the book design was agreed upon, and the title was a go.

And, of course, until the regular semester was over, my summer classes had found their groove, and we’d moved out of our house. (Note: we haven’t moved into our new one yet, which is another update altogether.)

But really, it was a version I couldn’t tell until I could finally stop and just be, if even for half an hour. I hate the trite comparison that writing a book is like giving birth to a baby. Having been through both, I can vouch for the insipidness of that saying. Yet I do get stuck on the word “labor.” As in, to work, to toil, to physically strive for something.

Writing a book is not an easy task. Writing a book like my second book, a social history of modern chronic disease, which requires an extensive amount of research, interviews, and synthesis, would never have been easy. But researching it over the course of the past three years and writing it over the course of the past two? Honestly, it’s been grueling. Challenging, wonderful, exciting, and rewarding—absolutely. But finding the physical hours to carve out for it and the mental clarity and headspace to give it what it needed was one of the hardest things I’ve done.

(A quick recap of the past two years: high-risk, medically –intensive pregnancy, newborn/infant with health problems, catastrophic family illness, full-time job, teaching overload on top of that, new business, selling one house and buying another, chronic illnesses, etc., etc.)

I made a promise to myself and to my daughter that none of these other obligations would impact my time with her. I was (and am) fortunate enough to be her primary caregiver and to only use part-time childcare. That means getting everything else done around her, and that flexibility comes with a lot of choices. When you throw a book into this mix, almost everything else—socializing, blogging, sleeping—falls to the wayside.

Getting this book done was active, conscious, deliberate work. I remember setting my alarm for 4:30 am after stumbling into bed after the midnight feeding for almost a whole semester, tip-toeing in the dark past the nursery to my office, where I tried to squeeze into two hours of writing before she woke up and it was feed-play-leave for work time. There were the Thanksgivings, Christmases, Easters, Mother’s Days, and Memorial Days where I stole away with my laptop the minute my daughter went in for a nap or went to bed. Eight pm through midnight became a built-in, automatic part of my workday.

My husband’s new business has him working both weekend days nine months a year, so when he got home late Saturday and Sunday afternoons, we’d trade off, and my workday would begin. We made it work, because that’s what you do when it’s worth it.

For most of this time, I lived in the extremes I thought I’d moved past, the kind of mindset where the only two “sick” days I let myself take were days when my doctor had to ask me, “Are you sure you shouldn’t be in the hospital? I think I should admit you…?”

I lived this way knowing it wasn’t sustainable long-term, and that’s sort of the point. My daughter will only be young once, and I don’t want to miss anything. Time is precious and fleeting as it is, as evidenced by our current state of bike riding, sentence speaking, ladder climbing, number counting, and general big kid-ness.

Getting a deal for a book like this, especially in the current economic climate, is an opportunity for which I am acutely grateful. I had the chance to ask questions I didn’t know the answers to, and was given the time and space to try and figure them out. I had to do that opportunity justice.

Some days, when I was particularly run down, I wondered what it would be like if all of this didn’t happen at the same time, but that was the exhaustion and self-doubt creeping in. It took me longer to finish the book than I anticipated, but the book is much better for that time and space. I wandered down paths I didn’t even know to consider when I started, and those journeys made for a richer discussion.

In the end, I fought. I fought to preserve my time with my daughter, and I fought to get this book done when I often felt pulled in many other directions...because that’s what you do when it’s worth it, and because it’s worth it, there’s no choice then but to do it. Most parents out there can echo that, no matter our disparate circumstances.

I write this not as an apology for my somewhat erratic presence in this space but as an explanation. Many things had to give, and I’m starting to recalibrate things a bit—new posts, new look, new perspective…lots of changes, and more engagement.

But tonight? Tonight I’m going to leave the student papers for the morning, and power down the laptop. For the first time in so long, it’s really a Friday night.

Sunday, May 27, 2012

So I am way late in writing about the now-infamous Time cover story "Are You Mom Enough?"

I’ve read lots of responses to it, including this thoughtful Boston.com blog post, but every time I tried to compose a post, life (work, infection, moving,) and, well, mothering, pulled me away. So here it is, 3:30 am, and I just finished up some work and can begin drafting my thoughts.

More than anything else, my initial reaction after reading the article on Dr. Sears and attachment parenting (and the extreme some parents can take it to) was to ask, who cares? I’m not being glib here. I am too busy getting through the day and doing the best I can for my kid and for everyone and everything else in my life to care what other mothers and families are doing. Formula or breast milk? None of my business. Pacifiers or thumb sucking? Again, not my call. What’s it to me if you co-sleep or Ferberize or Baby Whisper your way through the night? I’ve got my own sleep to worry about. I have my preferences and my data and evidence for my own decisions, and a pediatrician I trust to discuss things with, but my choices don’t need to be yours.

And you know what? Then I had my daughter, and I quickly realized the best information about raising her came from her, that if we paid attention to her cues and adapted as her needs changes and listened to our instincts, we’d figure it all out.

Turns out she hardly used the bassinet because her reflux and other health problems meant she needed to be upright. Turns out she loved napping with her head on my chest and her legs tucked up under her, and that the old adage I'd read was true: Babies don't keep, so hold them as often as you can. Focus on the moment.

Turns out she loved her pacifiers but gave them up without much fuss. Turns out she didn’t really need that 4am feed and just wanted to hang out, and that sleeping through the night came naturally for her when she wasn’t waking up to socialize. Turns out she didn’t use that baby carrier nearly as much as she did in my pregnancy daydreams because even as a tiny infant, she always wanted to be upright and on the move. Turns out my husband was right, a baby food maker is unnecessary if you have a couple of pots, a blender, and the desire.

Turns out the world didn’t end and I didn’t feel any less bonded when I had to stop breastfeeding at six months (this, after eliminating dairy, soy, and eggs; after lactation consults and digital scales and hospital grade pumps; after mastitis and supply issues and multiple supplements every day and Oh My God I am spending far too much time pumping for so few ounces when I could be spending time with my baby!) Plenty of other mothers nurse much longer, and some never do, and we’re all doing the best we can with the variables we have. The learning curve of motherhood is steep enough.

So why does this idea of “mommy wars” persist? Jenn at What The Blog?, wrote, “Mommy wars aren’t created by magazine covers. They’re created by moms who doubt their own choices then attack others who are different just because they’re threatened by self doubt. Mommy wars aren’t against each other. They’re against ourselves, and that’s why no one ever wins.”

To an extent, I agree with this. With some time and distance to move past my immediate reactions to this dialogue, and as I watch my daughter grow into more of an independent little person every day, it occurs to me that parenting is an opportunity not to be better than, but simply to bebetter: better versions of ourselves, because our children notice everything we do, because just as we take cues from them, they take so many cues from us.

If we want our children to be compassionate, to be open-minded, to be the ones who stand up for the misfit on the playground or speak respectfully to elders, that starts with how they see us treating others, speaking to and about others, and speaking to and treatingthem. If we want them to have confidence in themselves and in their ability to make decisions and act independently, then we need to model that confidence in our choices—our parenting choices, our work choices, our lifestyle choices.

Maggie May at Flux Capacitor writes, “We are given this gift in our children, the gift to be stewards of the making of their brains and souls and bodies. We are watching a supernova be born, we are watching something as breathtaking and fragile and combustible and miraculous and beautiful as a star being born in the few first years of our children's lives.”

I am not a patient person, not naturally inclined to be carefree or completely engaged in the present. When I am with my daughter, those things come much more easily. That is a gift she gives me.

In some ways, I am in a little mothering bubble—not quite a SAHM but with an unconventional schedule that allows me lots of time with my daughter, and despite a full course load and teaching overload plus a writing career, not a traditional working mother, either. It’s hard to find a real sense of community when you straddle different worlds (a longer post on this is coming), but it also insulates me a bit from whatever competition or judging might go on (mostly).

But what I’ve taken from the newborn classes and infant music sessions and the playgrounds and library storytimes is this:

Look for the mothers who, despite the blowout diapers and missed naps and toddler meltdowns, despite the lack of sleep or downtime and the stress of the daily grind that motherhood entails, have joy. Joy in their children, joy in the visceral, physical act of parenting. I’ve seen them, I’ve witnessed their ease and confidence and comfort in their own mothering skin, and I’ve learned from them. Whatever Mommy Wars might be going on don’t seem to touch them. That is a gift they give to their children.

Tuesday, May 15, 2012

It’s been an intense spring, one marked by necessary cuts. Some are exciting and liberating and others are more raw, but all are ultimately for the better.

Like many of you, I suspect, I often write and blog to process, to work through decisions and reflect on experiences that have already happened. A couple of months ago, when I wrote this post that started as a rumination on the writing and editing process, it really did begin with writing itself, and slowly stretched to ideas about living with illness. Still, it was primarily retrospective.

But I thought about the idea of “necessary cuts” constantly after I posted, and a couple days later, I had a life-altering epiphany. The writing informed the decision, not vice versa.

We should sell our house and move.

A few weeks after that moment of clarity, our house was thoroughly scrubbed, streamlined, and staged, and went on the market. We scoured neighborhoods in new places, comparing schools and commutes and spaces, and driving by listings. Just a couple of weeks later, our house was under agreement, and a few weeks after that, we signed an offer on a house in a much different place.

For the past four and a half years this has been a wonderful home. It’s got character and a good layout, and is in an active area with many urban amenities: public transit, coffee shops and restaurants and playgrounds in walking distance, proximity to highways and hospitals and so much else. Yet many of the things that were attractive to us then don’t necessarily reflect our reality now. Just as suddenly as we fell in love with this place (and it was immediate—we weren’t even looking for a new house), we knew it was time to move on.

For the first time since I was eighteen, I can see myself living somewhere where espresso, Thai food, and the subway are not within steps of my door. There are many reasons to leave that make sense to us, just as there were many reasons to live here when we bought it. But this house, as much as we love it, and the lifestyle this house represents, simply aren’t the right fit for us anymore.

It’s a necessary cut, indeed.

We held our breath a lot in this house, and did a lot of hedging. We were drawn in by the spacious, quirky bedrooms, eyeing the sunny front bedroom as a possible nursery someday, yet in the same breath we told the then-sellers to take their swing set with them because we knew there was a real chance we’d never have a child to push on those swings.

We are living in the after, not the “if,” and we have a lot more clarity in terms of what we want, but more than that, what we need.

Beyond concrete items like the walk-in closet or the updated kitchen, there are many things I will miss about this house. It was where neighbors became friends. It was where a business was launched over tamales and margaritas with friends, and where Supper Clubs were held well into the night. It was the home where an idea for a second book took root, and where, over several years, the stack of books and articles somehow became a cohesive narrative. It was where we hosted Thanksgivings and cook-outs and sleepovers with nieces. Its closeness to Longwood Medical Area meant it served as a home base and staging ground whenever my loved ones (or me) were in the hospital (which was far too often, really. Really.)

Our bedroom is where I closed the door and cried quietly month after month (after month), and my home office is where I got the call that finally brought happy tears after so many years. The sunny front bedroom is where we painted the walls a gorgeous pale blue/aqua color because we wanted our little girl to have something other than pink, and on whose walls we stenciled the words “Dream. Hope. Believe,” scarcely believing this was in fact our reality.

The sunshine that streams through the living room window every afternoon was my constant companion during weeks of bedrest, and the hustle and bustle of cars, trucks, and neighbors connected me to the world outside those four walls. The front door was covered in balloons and Welcome Home signs when we brought our baby home from the hospital, and the hardwood floors and living room rug are where she crawled and walked for the first time.

We’ve had so much joy here, and so much tough stuff along with that joy. Things fell apart and stitched themselves back together—not seamless, but stronger nonetheless.

In a few weeks, we’re off to someplace much different. More land, more green, more (mental and physical) space to exhale. I did not realize how much I was still holding my breath, until I wasn’t anymore. We’re sad to leave the house was truly a home, but we’re even more excited for a better fit, a better life for all of us.

Sunday, May 13, 2012

--My husband had to work today, so it was just my daughter and me. We did our usual morning eat-play-dress routine, and as we headed out to go to church and to do some visiting, the sun broke through the clouds and “My Girl” came on the radio. What more could a Mama ask for on Mother's Day, really?

--Every stage is so much fun, but I particularly love the constant narration of daily activity phase we’re in right now. “I did it!” she says, standing up with a huge grin on her face after she completes a task. “All done now. Bye-bye!” she says, shoving her plate of food away from her. “I’m all set,” she says as she’s buckled into her car seat.

--Watching my daughter and all of her grandparents interact and seeing how much they love each other is great to witness. One of my favorite little things? When my daughter walks over to me with the phone in her hand, hits speaker and re-dial, and calls my mother to ask her to sing “Ba Ba Black Sheep.” Asking her who loves her and hearing her say their names? Amazing.

--I want my daughter to feel like part of a pack and that she is loved by and connected to more than just her father and me. She loves her eight cousins and when she asks for them by name, it takes me down the road a few years to sleepovers and bike rides and those all-important bonds you have with the people who have known you your entire life. She woke up and asked to call some of her cousins today. While I wouldn’t oblige her since it was 6:30am, it did make me smile.

--Lately, she likes to take both my cheeks in her hands and kiss my face noisily and earnestly. It makes me laugh, which makes her squeal with laughter and eggs her on, which makes her lean in and kiss me again with even more exaggeration, which makes both of us laugh harder. We just went through several rounds of this before bedtime. It doesn’t do much to settle her down, admittedly, but it’s hilarious and I know she’ll move on to something else soon enough; I don’t need to rush that.

Nineteen months into this, I still can’t believe I get to be someone’s mother, that I get to be her mother. She lights up corners of our world we didn’t even know existed.

Happy Mother’s Day to all the women who love, nurture, guide, and advocate for children out there.

Monday, April 16, 2012

“It’s Easter! Have you eaten yet for the holiday?” We had to strain to hear her through the oxygen mask over her face, but she was not deterred by that, or by the extreme stress her heart and lungs were under.

If you knew my Nana, you would not be surprised this was the first thing she said when she opened her eyes and saw us gathered around her hospital bed. The consummate Italian cook and family matriarch, she considered feeding her family the ultimate act of love, of physical and emotional nourishment.

To say her death at 92 was truly a shock is a testament to the indomitable force of nature she was, a feisty, active, sharp, loving, funny, tenacious, and hardworking woman until the very end. If you knew my Nana, you knew how relentless she could be in pursuit of what she believed, how dogged she could be in her role as devoted wife, mother, grandmother, or great-grandmother. Your shoulders would shake with laughter and your eyes would tear a bit as you recounted her latest wild escapade, or heard the most recent “Nana-ism.”

A force of nature, indeed.

Those of us who know her have all these stories, we catalog them and re-tell them and they are our buffer from the reality of grief, our collective place to land. As one writer likened it, they are our pockets full of gold.

So while I keep them preserved among those who know them and know her best, here’s what I know.

I know she lived, as my husband said, a big life—one filled with sacrifice and sorrow, unquestionably, but one filled with so many relationships, so much love and grace.

I know from every handwritten note or pot of tomato sauce, from every Rosary she prayed for us, or wacky Christmas gift we received, that we were loved. I also know she knew how much she was loved by her family.

We ended every phone call with “I love you.” Two days before she died, I got to hear my daughter say “I love you, Nana” and got to see my Nana’s reaction to it. I know that makes me incredibly fortunate.

The last interaction we had while she was awake was when I held her hand and then kissed it. No words were exchanged in that moment, but she felt it, and it said everything we needed it to.

I know I miss her already.

I know that when I shake my head, smiling, and use the word “relentless” in relation to my daughter’s quest for whatever object or task she is focused on, that I am seeing shades of my grandmother in her.

Monday, March 12, 2012

While saving a podcast I created for my students the other day, I inadvertently clicked on another item in my iTunes folder: my daughter’s first cry, recorded with my husband’s iPhone the moment she was born.

Momentarily overwhelmed with emotion, I scrolled through until I found another amazing entry: the sound of her hiccupping in utero, recorded with my iPhone during one of the many non-stress tests I had during my pregnancy. You hear the whoosh and thump of her heartbeat, and then every few seconds, you hear this unmistakable blip that is a hiccup.

An entry from a few months later makes my body clench: the horrifying sound of her struggling to breathe, rasping and gasping and choking and wheezing, when she was quite sick as a young infant. I played it for her new specialist so he could see what I meant when I talked about how much she struggled at night and while eating.

He nodded, playing it over several times, and sharing it with the fellow on his rotation. “I am so glad you recorded this,” he said to me, relaying any private fears of mine I’d look like some overly paranoid first-time mother. It was the first step in accurately identifying some of her health problems and getting her the right treatment.

My smart phone is just one of many ways technology has changed my experience of being a patient, being a pregnant patient, and being the mother of a patient. I get text messages from my pharmacy when it’s time to refill my prescription, and can accomplish more over brief e-mail exchanges with my own specialist than I do in some office visits. The patient health management platform my hospital uses has all lab results, imaging, results letters, and medical history available with a few clicks on a password-protected site.

I’ve written here before how social media is an important—and often, the only—source for connecting with other rare disease patients, people who can provide the anecdotal information on treatments and best practices that can make such a difference, information that we can use to have conversations with our physicians. It’s another form of data, and in the digital world of health information, data matters more and more.

I’ve been writing and researching in a lot more depth the way technology and social media have influenced patient-hood, and I know this post is just a snapshot glimpse of the many, many types of application. But as someone immersed in the research and the statistics, what I would really love to hear more about are the everyday experiences people have.

So tell me, how do you use technology to manage illness? How have technology and social media influenced your experiences as a patient? How you advocate for yourself or find information?

Friday, March 09, 2012

I had big plans for Spring Break—fun activities and play dates with my daughter, final round revisions, finishing the drafts of multiple blog posts, spring cleaning, etc. Instead, the week of Spring Break became known as the second week of the Late Winter Plague in these parts, with Baby Girl getting hit the hardest and the longest, so plans changed a little. While I catch my breath and catch up on life a bit, a quick nod to (Weekly) Grace in Small Things.

1. I don’t like the reason why my sick little girl was so sad and needed so many extra cuddles the past couple weeks, but I am very grateful that I could be there to give them to her when she needed me. This unorthodox schedule I keep has some challenges, but the benefits? Priceless. Truly.

2. A pediatrics group who not only responds to calls quickly and books in appointments on the spot but also has nurses and nurse practitioners who call on their own first thing in the morning and just before leaving at night just to check in on Baby Girl because they are thinking of her.

3. Longer days and mild weather, which brightens my mood and reminds me of all the playground and play time possibilities that await us this spring.

4. A Friday night off from any true work, which means time for putting laundry away, blogging, and perhaps even reading a book for pleasure (gasp!). It’s been way too many months since I had one of these nights.

5. I spend so much time commenting on writing and doing so much writing and revising on my own that I have been a bit of a slacker in terms of posting. But I am always reading, and figure it’s worth a shout-out to some of the blogs I frequent these days:

Friday, February 24, 2012

When I was in graduate school, I wrote a novel. It wasn’t particularly good, and it won’t ever see the light of day now that workshop days are over, but there was one section in one chapter I adored. I revised it over and over until each word felt perfect, until the description was just right, the details distinct and evocative. It was one of my better pieces of writing, and for a long time I resisted what I knew deep down was true: I needed to cut it. It just wasn’t working for that section, and keeping it there because I liked the writing threatened the integrity of the project.

A few weeks ago, I was feverishly revising the last couple chapters of my book. They were rougher chapters—big, unwieldy, complex chapters that I threw all kinds of ideas into, knowing they needed refining and chopping. And late one night I realized I needed to cut a whole interview portion I really liked, about a subtopic that was really interesting. As strong as the ideas were, they weren’t essential to the chapter’s narrative. In fact, they prevented the arc I needed from forming.

I knew what I needed to do, but it was still hard. Hard to see that even if that section didn’t make the cut, that it was still valuable, that it was still a part of the process involved in writing and drafting a successful chapter.

I thought about that after I cut it, and looked around at the piles and piles of research stacked up all over my office—not to mention the thousands of electronic resources filed away in Gmail folders. How many of those have I read and forgotten? More than that, how many of those did I annotate and underline, scribbling notes on and tagging for use in iterations of chapters that don’t even exist anymore? I spent years compiling research, and what is staggering to me isn’t the amount that made it into the book, but what didn’t.

And yet it is all part of it, it all contributed to the process that ultimately resulted in a full draft of the book. Whether it led me to another source that proved useful, whether it sparked a question I asked during an interview, or if it just expanded my understanding and fluency on a particular topic, each piece had a role.

For better and worse, I am an outcome-based person. As a child, I cared more about my grades than my parents ever did. I see traces of myself in the students who bemoan a B+, who ask not how they can improve their writing but how they can get an A, who have a difficult time seeing that huge improvement from a rough draft to a final draft is an indication of success. I can empathize with that struggle.

The older I get, the less useful an outcome-based perspective seems. Perhaps it’s because so much of life resists clear-cut outcomes like grades or test scores. I know writing certainly does. Even though I am ranked and evaluated every academic year, I find it is the student feedback I get that is most meaningful to me. Maybe it’s also because the older you get and the more you risk, the more failure you open yourself up to, and sometimes all you are left with when things fall apart is the journey itself.

(Small proof I have evolved? I lose every.single.game of Words with Friends, yet I keep accepting rematches with my husband and (gasp!) still find it fun, anyway.)

Clearly, being a patient with incurable conditions has shifted my perceptions on outcomes. It’s not a question of the ultimate outcome—a cure—but more an issue of the everyday ebbs and flows of chronic illness. We can take the medications and follow the rules and still experience flares, but that doesn’t mean there isn’t inherent worth in keeping up with the minutia of daily maintenance and preventive strategies to minimize disease progression.

And becoming a parent? That has been the biggest influence of all. After our long journey to parenthood, and the intensity of our high-risk pregnancy, I have seen what is possible when we let go of outcomes altogether and the end result surpasses every expectation or dream we ever had. Watching this little girl grow into her own unique, independent person is a daily reminder that living in the moment, that appreciating the journey and the discovery, is a blessing.

I delight in what I learn she knows, and I love when she bursts out with new words, or recognizes new letters, or figures out how to do something new. But I find that the older she gets and the more she shares with us, I care less and less about pre-school placement, kindergarten readiness, or summer camp enrichment. I want the smile of pride she gets when she screws a bottle cap back on a seltzer, draws a picture, or drinks from a cup without a lid, the earnest smile that lights up her whole face, to follow her—no matter the spilled cups, the missteps, the experiments that don’t pan out as planned.

Friday, February 17, 2012

So often lately I can’t seem to get out of my own way. I have these ideas for posts and write them in my head and know just how they should go, the points they should cover and the links and resources they should include.

And then I sit down to write them (or add to the few lines saved in a draft folder) and I don’t have the mental energy or clarity to do them the way I want. So I get stuck—if I can’t do the stand-alone, substantive pieces I’ve planned, I don’t do anything.

Really, that’s not what writing—or blogging—is about. After all, when I hit rough patches in my freelance work or in the book draft, I don’t stop altogether. I just move to a different section and come back to the problem area when I’ve worked it out.

Even more than that, I find that what I want to write about lately aren’t always the things I am comfortable writing about, or aren’t necessarily what a blog about chronic illness covers.

Aside from days like today, when weeks of feeling sick caught up with me and I am flat-out, heavily medicated, almost hospitalized sick, chronic illness in of itself isn’t something I spend too much time thinking about, and the fundamentals of it—symptoms, treatments, fluctuations—have never been all that interesting to me as a writer. Of course it’s part of my daily life, like when my lungs are so tight it is hard to carry my daughter upstairs, or chest PT happens at a time when she needs me. But family stuff, parenting stuff, work stuff, and, well, life stuff consume most of my attention and efforts.

It is the relationship between chronic illness and all those other facets of life that is a richer source of material, and I suppose it always has been.

Blogs grow, writers grow, interests grow. My life has changed a lot since I started this blog as a single graduate student. My roles are different now—mother, wife, full-time faculty member, published author—and as a result of these changes, I am different, too. Of course—we all are. So instead of fighting this constrained feeling, this writerly need to express the ideas that really resonate with where I am now, I need to work through it. Just write, I tell my students during free write exercises. No caveats, disclaimers, hesitations, or explanations.

That’s my plan, then, to try and find my equilibrium in this space, to be a more engaged writer, reader, and commenter. Some of the topics I’m interested in exploring more include parenting, parenting after infertility, clean cooking and eating (for children, too), writing, and, as a testament to this blog’s roots, how to be a better patient—because that role still matters, and continues to change as everything else does.

As readers, what are you interested in discussing more?

And finally, because it is an important piece of equilibrium for me, a quick installment of (Weekly) Grace in Small Things:

1. Lazy, happy dogs sprawled on the rug, sleeping in the warm beam of February sun streaming through the front window.

2. A giggling, chuckling toddler whose laugh reaches every corner of the house and always makes me smile.

3. Words with Friends, which makes time spent in exam rooms and waiting areas go much quicker, and is a small, silly way my husband and I keep in touch during the day.

4. The ability to say yes, without hesitation, when my worried doctor asks I have anyone who can help me out while I get over these infections.

5. Catching up with a good friend and wonderful writer this week whose continued success and dedication is awesome to watch.

Friday, January 20, 2012

Fridays feel like a good day to take stock—the grind of the week is behind me, the promise of the weekend and all I want to fit into it is just ahead. So, small things that have an impact today:

1. Posts that make you think. I’ve seen Glennon Melton’s post Don’t Carpe Diem all over the place lately, and I love the idea of Kairos moments. I am a fan of Momastery, and actually have my own post in response to another one of hers percolating.

2. CaringBridge. It’s awful when families and children go through serious illness and trauma. But it’s wonderful that CaringBridge exists and offers them a free, easy, reliable way to keep family and friends informed so they can focus on what’s most important: the patient. It’s been around for awhile but right now I know several families using it so it’s a good reminder.

3. My iPhone camera. We have a fairly nice camera that I wish I used more, but I have to say that having a quality camera built into my phone makes it so easy to capture little moments throughout the day I’d miss otherwise. I’m constantly snapping funny pictures of Baby Girl on the run.

4. The Daily Show. We don’t get a lot of downtime at the same time these days, so having one half-hour where we’re both in the same room and laughing at the same stuff is nice. And Jon Stewart during the campaign season? On fire.

5. Independent bookstores.The one near us is really supporting of local authors (thanks, Newtonville Books!), has an awesome children’s room, and is starting a drop-in playgroup for toddlers under 2. How cool is that? We’re definitely checking it out next week.

Friday, January 13, 2012

Taking the lead from Rachel, I thought I’d try doing Grace in Small Things. Realistically I can probably only do it weekly, but it’s a start, and it’s a nice way to be appreciative of the smaller things that can get lost in the shuffle of everyday life.

1. Long weekends. Even though we just started a new semester, I am so looking forward to the upcoming three-day weekend. More time to hang with Baby Girl, to work on the book, and to prepare for next week’s classes.

2. Time Machine. I love this back-up feature on my Mac. It takes the thinking out of it for me, and means I always have a recent version of all my work saved.

3. Pho. Baby Girl and I are both a bit under the weather, and the thought of steaming, fragrant Vietnamese broth (cooled off a bit for her, of course!) is lovely.

4. Hand-me downs. Baby Girl has a lot of just-older cousins, and we’ve been lucky to get so many bags of beautiful clothes. It’s much colder than it has been, and I pulled out a great winter coat for her today that is brand new to her. Love! Plus, it’s always neat to see her in things I remember my nieces wearing—lots of good memories.

5. Libraries. Our town has a wonderful, spacious, vibrant library. We just started a weekly Story time there this month, and it’s been a lot of fun hanging out after and looking through all the books. It’s a good way to while away a winter morning, and to socialize with other babies the same age.

Sunday, January 08, 2012

My syllabi and rosters are printed, my lesson plans are set, my work clothes are ready and my bag is packed. A meticulously detailed schedule for completing my book revisions during the semester is open on a Stickie note on desktop, and my January Google calendar is updated with deadlines, reminders, Mother Goose Story time, playgroups, and meetings.

I spent last night making a huge batch of homemade chicken vegetable soup for lunch for my girl, and several dinners’ worth of a roasted vegetables/turkey/GF pasta dish for her, with extra to freeze.

I always start the new semester with such good intentions of getting it all done, of sticking to the very detailed schedule. I know going in it probably won’t happen, but I’m learning to prioritize so that the most important tasks get the best of me.

A few months ago I wrote a post on working, parenting, and chronic illness and promised a follow-up on the more practical aspects of getting it all done. The fact that it took me about three months to do so should tell you I don’t have a ton of credibility in that department right now, but here’s what I’ve been doing when I haven’t been blogging.

For the most basic stuff, let’s start with the fact I make lists—daily, weekly, and monthly. I can’t go to sleep without my to do list for the following day set.

It is really important to me that my daughter eat healthy, whole foods—no junk food, no processed food, no baby food—so I spend a lot of time on the weekends (Saturday or Sunday night, usually) making a bunch of different meals (homemade stock/soups, pastas, risotto, roasted vegetables, stir fry, etc.) I put a lot of them in the freezer so that if we don’t all eat together before her bedtime, or we’re out doing an activity and then we have to squeeze chest PT in right around dinnertime, I always have something healthy and flavorful for her. She adores spicy and sour foods, and her favorite right now is hummus—she loves it so much we’re going to try and make our own next weekend so we can add extra spice to it.

I take advantage of any available work time. For example, her naptime is automatically my work time, seven days a week. (Not housework time, but writing, editing, or evaluating student papers, etc.) She goes to bed around 7:30pm, so typically six nights a week I plan to work at least a few hours between her bedtime and mine.

I am a lot more flexible with my notions of when things should get done. Laundry? I fold it at 11pm, when I’ve closed my laptop and unwind with The Daily Show. If I happen to be home for an extra hour in the morning and know I will be busy late in the day, I’ll throw a bunch of chicken pieces in the oven while I make my morning coffee. (Not appetizing, but I might as well use the time while I have it.)

Like pretty much all of us, I multitask—but I’ve gotten a little better about having more discretion about what things are appropriate for that. Cleaning the kitchen or cooking dinner while returning a phone call is one thing. Trying to conduct an interview while juggling projectile vomit or doing a bottle feed never worked out that well for me.

For better or worse, I have a sort of tunnel vision, particularly during the academic year. I don’t expect free time, and I don’t want to squander any time, either. I usually know I will need to work at least one weekend night, and I am okay with it because it is more stressful for me to have things outstanding than it is to just get it done. This time when she is young won’t last forever, and I don’t want to miss any of it. When the deadlines and the course work and the chest PT and the appointments and the laundry and the scheduled-ness begins to feel like there is never a single moment to just be, I know that the hard stuff is temporary, too.

And well worth it. (What is that famous quote? “I never said it would be easy; I only said it would be worth it?” I’m a fan.)

But there are some things I am going to try to do better this semester. I mentioned wanting to be more presentin more aspects of my life. I am hoping to bring home less work from campus (physically and mentally) by using office hours more productively. I’m going to try going into campus much earlier in the morning to work on the book then, so I meet my revisions deadline. I am going to try and keep my laptop upstairs in my office more, so that when I finish at night I am truly done and whatever I am doing—talking with my husband, watching something on DVR, etc—gets my full attention. Little things, but hopefully things that will make me feel like I have more space to just be.

I know a lot of this is obvious stuff, but somehow putting it down gives me more accountability. What about you? What things do you do to manage working, parenting, and chronic illness? What strategies have helped you be more present, or helped you save time?

Looking back, I’d have to say that 2011 was the year of figuring out where to place everything else in my life, since my baby comes first.

I remember writing Bring It, 2011 , so vividly. I was sitting at our breakfast bar late at night, and I could see my reflection in the kitchen window as I hunched over my laptop. I was days away from starting my first full-time semester, though I’d gone back to work on a more flexible schedule a few weeks after she was born. I wrote how my biggest concern was figuring out how to balance it all—a young infant, a job, a book, health needs, family health needs, etc.

I savored every morningspent with my giggling, wriggling little baby, who quickly became a a signing, walking, talking, exploring, pointing, dancing, chair-climbing, fork-wielding toddler. No matter what else was going on, how many stresses and anxieties, obligations and expectations the year presented, as long as she was okay, nothing else mattered.

And as the year progressed, and after some successes and some misfires, I came to the conclusion that sometimes, balance isn’t possible and knowing how to prioritize is much more important than that ever-elusive notion of balance.

I’ve come a long way since that night a year ago when I was nervous about making all of this work. When I think about what I want for 2012—for my daughter, for myself, for my family, for the rest of the roles in my life—I want to be as present as possible.

Sure, I have more concrete goals: finish my book revisions by February 1; implement some new strategies in my courses; be more consistent in attending playdates and playgroups with my daughter; getting back to more regular group classes at the gym; keeping in better touch with friends, etc.

But the larger theme that ties all of those smaller threads together is being present. It is something I have done well with my daughter—each day, the time I spend with her is hers, whether we’re playing in her room, at music class, or at a playgroup. No laptop, no television, no scrolling through Facebook updates on my phone. The time with her is precious and hard-fought, and she deserves the best of me.

When I’m in the classroom my students are my focus, and when I read their work, I give it my full attention. I’ve started using the full screen option in the latest Word version, which blacks out my desktop and browser windows and allows me to look only at my words when I’m working on my book.

But now I want to focus on harnessing that in other areas of my life. I find myself doing work while getting my haircut, or glued to my laptop till midnight while my husband sits on the other couch watching “our” shows, answering my phone while sending e-mail, and other things less minor and more ridiculous. All of this is to say, it’s the next natural step in an effort towards the prioritization I wrote about in 2011—if I am going to do something, then I need to focus in on that one thing (or person, or interaction), and be fully present.